Repercussion of Segregation in the Lives of Children Separated by Leprosy

Abstract

Introduction: Leprosy is a disease that carried the characteristic of incurable and disfiguring for years, causing the social segregation of patients before the family and society.Objective: To describe the repercussion of segregation in the lives of children separated by leprosy who lived in Oswaldo Cruz School.Method: This is a qualitative study with the methodological referential Oral History of Life. The sample consisted of 52 family members of former patients segregated in the São Francisco of Assis Cologne Hospital, registered in the Reintegration Movement of People Affected by Leprosy in RN (MORHAN Potiguar). The network was structured from the zero point and consists of ten collaborators. Data were collected through individual interviews, which were recorded, transcribed and submitted to thematic content analysis.Results: Emerged four themes: broken ties (broach the consequences in family relationships established by the experience of having a relative affected by leprosy); stigmatized (emphasize the obstacles in social relationships experienced by family member of leprosy former patients, who although healthy, were victims of social exclusion, stigma and prejudice); primary school (reveals the bad treatment experienced in Oswaldo Cruz School, as well as the resilience process of education received); from leprosy to Hansen's disease (were presented reflections made by collaborators related to leprosy control policy in the past and present).

Leprosy in children in Cuba: Epidemiological and clinical description of 50 cases from 2012–2019

“…The disease often produces irreversible nerve damage, which manifests as severe neurologic dysfunction, deformity, and disability. Additionally, the disease causes substantial stigma and social isolation due to skin lesions, deformities, and limb loss [3,4]. Globally, most leprosy cases are identified in adults, but a significant number of cases are also identified in individuals younger than 15 years [5].…”

Mental health, stigma, and neglected tropical diseases: A review and systematic mapping of the evidence

“…Types of experiences: children of people affected by leprosy facing social problems in the community(161), being denied admission to regular schools(158), or feeling stigmatized, which led to selfisolation(179); adult family caregivers in Ghana being labelled and having limited opportunities for social interactions outside the leprosarium and limited opportunities for getting jobs(163); less than 6% of family caregivers experiencing discrimination in one Indian study(180) …”

T’sarat/leprosy: paths taken by relatives of former patients treated in the asylum environment / T’sarat/hanseníase: caminhos trilhados por familiares de ex-doentes tratados em ambiente asilar

“…The inmates were separated from their children and many of them were kept in institutions called preventórios, which had the function of prevention, since it was believed that the child would have a high probability of developing the disease because it was the son of a patient, justifying his departure from Especially where they would be examined periodically. 3 The association of leprosy of the past with the absence of cure was reported by the study' s collaborators when they remembered experienced episodes that culminated in family split.…”

“…2 In Rio Grande do Norte(RN)State, the scenario adopted for the segregation of the patient was the Hospital Colônia São Francisco de Assis, located in Natalcity, which was founded in 1929. 3 The hospitalization of the HDbearing patient in colony hospitals, as a form of disease prophylaxis, hasmodified the scenario of social relations of the patients, then breaking bonds between people of their familiarity, as friends and family members, thus destroying family bonds. 4 The sick individuals were compulsorily removed from their homes and separated from their relatives, friends, their work and the community where they lived to be kept in leprosy hospitals, which functioned as a separate city, where the lepers tried to rebuild their lives.…”

“…That had worsened in quality and in their life trajectories. 3 Having a family member with HD was synonymous with social disorders, and many relatives of those affected by the HD were also temporarily isolated by the possible probability of carrying the disease, then suffering strong stigma from the society. 5 With the advances in pharmacology research and the evidence that isolation did not stop the disease, the policy of compulsory hospitalization began to be questioned by researchers and was officially abolished in 1962.…”